For your Information--Do you believe this?

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  • Yazmin
    Yazmin Member Posts: 840
    edited November 2009

    I have the same question: What "tested and effective" methods are they talking about (consideration the number of substances that are taken off the market in a hurry, once it becomes clear that they are not just ineffective, but sometimes also deadly, which, unfortunately, always comes to light too late for some).

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  • Luna5
    Luna5 Member Posts: 738
    edited November 2009

    Carole, I'm really sorry the group of women who were FOR BC awareness were unwilling to accept that our individual choices of treatment may be different but that doesn't change the fact that we are all in this together and should support each other.  I feel more comfortable with the decisions I make when I know both sides and why people chose what they chose.  It would be easier if the answers were clear with no controversy.  I know from an e-mail that the John's Hopkins people would have normally recommended an AI for someone with my stats and yet my onco recommended Tamox.  This proves that there is no hard and fast agreement even amongst the "mainstream protocol" presenters.  Lucky for us in this quest to learn as much as we can as fast as we can; we have wonderful people all around the world researching, questioning and sharing information so that we can all make our choices.  We don't have to make the same choices to make informed choices.  Thank you to all of you and please keep the info coming....you have all helped and continue to help me and so many others make the decisions we need to make.  I don't want to make the wrong decision any more than anyone else does.  I don't have my head in the sand.  But, before I take any drug, I want to know why and how much the doc thinks it will help....not just, "well, its worth a try and if you don't like the side effects you can quit and they will go away."  What if I'm the rare one who gets a stroke as my side effect...I tend to get the rare side effects.....that side effect won't go away.  So, knowing that about myself is why I need the doc to tell me precisely how the drug will do more help than harm and so far I can't find anyone who can explain it that way to me.  So, if I am not taking a drug that I should be taking...it is because no one has been able to make me see why I should.  I am intelligent enough to understand.  If they believe in it, why can't they explain it?  I'm sorry, Carole, that you have had to deal with so many "Its my way or the highway" folks lately.  None of us are hurting any of "them" by choosing differently for ourselves.  I hope whatever treatment any person chooses WORKS!!!!!

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  • anondenet
    anondenet Member Posts: 715
    edited November 2009

    Luna writes:

    If they [the doctors] believe in it, why can't they explain it?

    The honest answer is:

    1. Nobody has asked doctors to explain it.
    2. Doctors are just following the "treatment guidelines" and feel that's enough for them to learn.
    3. They never read the research studies on which the guidelines are based so they can't answer.

    That's why we must "trust but verify" by reading the studies ourselves. Unfortunately, people are more likely to count their change at the Piggly Wiggly than read up on the stats for their cancer treatment. Why is that?

    <

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  • Yazmin
    Yazmin Member Posts: 840
    edited December 2009

    ....And here is more on Tamoxifen. I know, I know: some people on this forum, feel that Breast Cancer Action is simply "anti hormonal treatments." The way I see it: this is an advocy group, with NOTHING to sell. Just as important: they are breast cancer victims, just like us:

    http://bcaction.org/index.php?page=policy-on-pills (Policy on Pills for Prevention)

    http://bcaction.org/uploads/PDF/SanAntonio3.pdf (Results of Approval of Tamoxifen for Risk-Reduction)

    http://bcaction.org/index.php?page=990518-2 (Tamoxifen News at ASCO is Bad News for Women)

    http://bcaction.org/index.php?page=newsletter-35a (Debunking a Wonder Drug)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Anomdenet and Yazmin,

    The tested/effective methods for dealing with BC, according to them, are Screening, Surgery, Chemo, Rads and HT. Nothing more, nothing less. From our conversations I learned that quite a bit of funding is available for BC awareness programs. I believe some of them are set up to market standardized care along with people like Kolada. Medical hexing indeed.

    BTW, I was told by my MedOnc that the "R" in HRT is being phased out because "replacing hormones will create BC not cure it. That was her argument against bioidentical progesterone.

    Luna5,

    Thank you for the caring words. I was so moved by your post that I had to stop reading it halfway through. Like you I continue to show up for my appointments hopeful that they will honestly and accurately explain the treatments so I can make informed decisions. I have been optimistic and enthusiastic but they constantly disappoint me. My MedOnc asked me to promise to get Radiation (blank stare in respone) and said that she will compromise and only prescribe Tamox for me for 2 years. She fears I will get blood clots. Isn't it possible that I could get blood clots in 1 year or even less? She has a remedy for it either way. She can prescribe a blood thinner while I am taking the Tamox. No thank you. They refer to the script but the answers I need are not in their script. Thankfully I can come here for "real" answers.

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  • Yazmin
    Yazmin Member Posts: 840
    edited December 2009

    Efflorescing, you wrote: "She can prescribe a blood thinner while I am taking the Tamox"

    Isn't it a sad state of things, as Susan Love puts it in her book, when the possible side-effects from one medicine are managed by adding yet another medicine, with other side effects? GHEEEZ......as Anom would say.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Yazmin,

    I would mix my own Tamox, Coumadin cocktail if she effectively explained that it's my only chance for survival. Problem is I can see the wheels turning everytime I ask a question outside of the box. "How would the Team respond to this?"

    It is very sad. I need to stop expecting more from them and stay the course before l tell them what I really think.

    Edited to say:

    I am not going to lower my expectations. I am going to demand answers. I am not pressing them because I fear they will not order diagnostic tests if I'm too difficult. My complacency is costing me time, money and possibly my health. Sorry for the rant but I'm a bit testy. I should not have to sponsor and pay bad medical care.

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  • Yazmin
    Yazmin Member Posts: 840
    edited December 2009

    Yes, I know what you mean about not pressing them. And I am happy to see that you will not lower your expectations.

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  • anondenet
    anondenet Member Posts: 715
    edited December 2009

    The tested/effective methods for dealing with BC, according to them, are Screening, Surgery, Chemo, Rads and HT.

    -------------------------------------------

    Well they are right about the "tested" part. They are completely wrong about the "effective" part.

    "Effective" is like using the word, "benefit."  It is a bait and switch word. Show me the benefit!

    Script for consultation:

    Patient: What exactly does "effective" translate to, Dr. Smith? Would you please direct me to the study which spells out how they determined what the benefit will be?

    Efflorescing, I know that dark, sinking feeling you get when meeting with doctors like this. It is a deep disillusionment that can eat away at you. I think we keep expecting they will finally be right about something. We don't want to lose faith. But we want the facts.

    Prescribing Tamoxifen with Coumadin is not okay. Tamoxifen is an officially recognized carcinogen ---but Coumadin is a drug that people bleed to death from all the time. Hemmoraghic strokes are widely reported.

    Remember when they put Tamox patients on antidepressants without knowing the combo had the potential to kill them off sooner? They just recently did the math on that.

    The Coumadin suggestion shows your doc is making this stuff up as she goes along.

    The irony is they don't want you checking your facts on the internet. Well, where should you check your facts? Where do they check their flippin' facts?

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  • cp418
    cp418 Member Posts: 7,079
    edited December 2009

    Dr Vogel's attitude reminds me of the doctors who pushed HRT on women going through menopause.  IMO proceed with caution and evaluate each medication based upon personal medical hx.  I choose not to take Tamox after BC dx at premenopause age 49 (no family hx of BC), but family hx of strokes and my mother had huge uterine fibroids (hysterectomy at age 45). I took Tamox for 4 months while waiting to schedule my oophorectomy and did have issues on it.  During ooph procedure surgeon did observe a small fibroid on my uterous - - very glad I stopped Tamox when I did. This is an Indivdiual choice. Tamox maybe useful for those with family hx but certainly not to recommend for everyone to jump on the band wagon like HRT.  Friend just went total hysterectomy after 1 year on Tamox (again premenopause when dx).  Full of fibroids and uterous the size of football.  These drugs DO HAVE other complications as seen with the number of women who post them on this site.  I guess Dr Vogel knows better than us.

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  • Yazmin
    Yazmin Member Posts: 840
    edited December 2009

    Amen, CP418. Besides, we cannot lose sight of the fact that Tamoxifen only "works" for a maximun of 2% or less of the women, as Anomdenet already reminded us above. Therefore, going without it, chances are it was not going to "do" anything for the overwhelming majority of us, anyway. But that's the good news: as you have clearly pointed above, it can also decide to do other things as well.

    That's what they call Tamoxifen's "Doctor Jekyll and Mr. Hyde" personality. Frankly, I don't see how we need to play Russian roulette like this.

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  • cp418
    cp418 Member Posts: 7,079
    edited December 2009

    http://www.publicbroadcasting.net/michigan/news.newsmain/article/0/0/1585620/Top.Stories/Women.Wary..of.Breast.Cancer.Prevention.Drug.Side.Effects

    Women Wary of Breast Cancer Prevention Drug Side Effects

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  • Yazmin
    Yazmin Member Posts: 840
    edited December 2009

    Well, to me, this is one more sign that there are more and more of us out there: wanting to think for ourselves, doing our own research, and sifting through conventional and alternative option to find which ones, on each side, will help us best.

    I feel this is a mouvement, and I feel it cannot be stopped, and that's good.....

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  • deni63
    deni63 Member Posts: 601
    edited December 2009

    I agree Yaz. We are paving a new trail.

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